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Just looked at the voting and I would like to see - Just veto CBT or any form of cognitive therapy in ME/cfs due to the behaviour of the research already done. Pending risk assessment gives them a toe in the door?

It is how MAGENTA and FITNET were used to coerce children to participate. At the time it took many of us to gently handle the situation to enable families to understanding ME and PEM and to sidestep the FII. I think I wrote a lot about this and kept most of the information which I can go through...

I think we need to keep bring up the MAGENTA trial and those quotes along with the FITNET/NHS trial, they need to be seen for what they were. If brain training does not support learning, why should it cure/restore health? If it worked we would all be world champions in everything we wanted to...

Just so I can get my head around this and I'm clear in what you are implying that "Maybe the surgeon washed his hands with purified water?". I hope they wore gloves when they operated. So would that mean if we tested others who have had different surgery's that this would also end up in the C1...

I understand but you must never dismiss the reality of most that live with the condition. Their truth is there it just needs to be seen. Family Courts are being tacked with this and along with Luke Clements, Fiona Gulen- Scott, Support not Separation and Parent Families Allies Network and others...

FOI is a good idea just to kick them into action but like you say it is the outcome that is important. What gives me hope and something to work on is the lived experience and how it is used, changing the narrative to meet an agenda is unacceptable but one we can show happens? This is heavy on...

My first draft of the letter to all Excuse the round robin approach but as you can appreciate time is short and my caring responsibilities increase at this time of year. I have been an advocate for those with ME and PEM for the last 10 years. I was involved in the new NICE guidelines and the...

The commissioning group in Suffolk, the MPs CEO's of all three hospitals and anyone else I can think of. I was asked at a presentation I gave at SNEE (Suffolk and North East Essex) how to make sure the services commissioned, showed that they understood ME and PEM and it is the same with this...

I think the biggest thing is the "further evidence of having ME at the bottom". I am now compiling a letter around that and in the New Year will be holding them to all of it. I did not have time to read in detail all that was written as I have learnt from experience very few if any medical...

I would if I knew how, will look into it but what would be better? I often put too much on. Now looking at the released the cross-government plan just released. I think I could work on showing how they confuse the words on there using the slides. Just sitting down to tweet this so here goes my...

There is enough evidence all logged, the recording of Sophia Merza in the film https://voicesfromtheshadowsfilm.co.uk/welcome/reflections/ to state that it happens on a regular basis and not just in ME or very severe. They are still working on Carla and a few others that I know of. We also see...

Spot on, it is all in the words they use and how they then use the meaning. I think @Jonathan Edwards is right "Multi disciplinary" and "complex multi system disease (or anything like those words) can mean complex mental health only or FND in other words. It is something I am thinking about a...

The other people to talk to are legal firms. It is never used in data collection and perhaps we should start looking because having a good conversation with them and hearing their experience, gives you a whole new perspective on things. Nothing will be perfect what ever we do, humans are...

I think there is more work underway, which is good to see. Sadly not many answer the questions posed to them but a good start? It has taken such a long time and effort to get this off the ground. As you read here other factors do matter and should always be looked at, it is the only way to see...

I haven't looked recently but they are well known to be wolfs in sheep's clothing. You have to look deeply into how they use their words/phrases and what they mean, as many will tell you. I think the bigger problem is BACME and their roll out by the NHS, along with FND clinics which seem to be...

But ECT has been used for a long long time so there is no excuse to not understand the impacts good and bad and why! We know the bias by mental health professionals is huge we need to ask the right questions and some very brave mental health professionals are asking the right questions. What...

Sadly my experience with a family member was not so good. To give a treatment without tracking all outcomes and collecting the data is wrong. To do it blind and without understanding how the brain functions while or after treatment is confusing to me. To not understand the changes it made for...

There is most defiantly a Pem state and we need everyone to understand this. The lived experience should be at the forefront of our understanding and knowledge, that is how illness works, you have symptoms and you measure them. Just because we know certain symptoms belong to a disease, does...

It seems to me that PEM (or what ever you want to call it) is not understood, looked for, tracked or individualised so that understanding of the core issue is seen. There may be 101 reason why PEM starts and once in a PEM state, there is a build up of symptoms that should be clear for all to...

I can't read the paper, but how can this happen is the question. If it failed before and the person was in the elderly bracket why would they try this treatment. This treatment is a first line treatment for psychotic depression? Well it had been going for years with no impact on good outcomes...